Sick to death of ADHD&ASD....!!!!

[Shellywelly1973]

I've not posted many times but I love the attuide of parents on here, as well as the depth of knowledge... so Im really hoping someone out there will be able to give me some advice or a good kick up the bum!!

I have 3 children DS1(7) has ADHD&ASD. Ive spent the last 4yrs fighting to get dx, wasnt diagnosed locally ended up at GOSH. Then the whole SA, restpite, DLA, the usual stuff . Anyway i ended up getting our LA to fund him at an independent AS school, as of last Feb...so at long last he goes to school fulltime !!

Ive spent the last 4 yrs trying to get to this point, hoping and praying it would make all our lives better. Im sure in the long run it will.

The problem is, i know this sounds awful but over the last 3/4 weeks i started to change... im sick to death of it all, the meetings at CAMHs, school, the extreme behaviour of my son, the isolation, the noise, the screaming, the routines, the other DC being side tracked.... oh i could go on and on...Yet this is meant to be the easy bit. Its almost as if the break from DS has made me realise how hard its all been. I feel like ive suddenly gained the perspective of those around me. Whereas ive always played down how hard it is and concentrated on the positive and considered us fortunate in many respects, now i really don't know how im even going to get through tomorrow...i just want him to go back to school.

How do i get back to the positive, strong and motivated state of mind i had a few months ago?? The usual stuff i do isn't working!!

Any motivation/advice greatly appreciated. xx

Hi Shelly

I am so sorry to hear you are feeling like this. I know exactly how you are feeling. You have put your all into applying for statement and fighting every step of the way to get the provision for your DS I felt like this too and once you have finally got what you needed and what you wanted you feel like you can breathe a sigh of relief however then reality kicks in and you are left to deal with the awful behaviour. I think that I felt that it would be a weight off my mind and it would be great not to feel stressed by it all but in reality having something so all consuming to keep my mind busy actually meant that I didn't have to listen or deal with my DD as much.
I like to have a bit of a project on the go so far I have redecorated the whole house and extended our kitchen I am out digging up the garden planting bulbs etc I just needed something for me to say that I am actually making a difference.
Is there anyone that can help look after or take your DS's out for the day either to give you some free time or for you to just spend one on one time with your lovely DSs' in turn? MY FIL is fantastic looking after my DS whilst I focus on DD.
You are doing a fantastic job you have fought so hard for your DS and it will reap the benefits in the future.

I also started taking Antidepressants something I always swore I would never do but they have helped enormously have been on them for 6 months but am thinking now of starting to wean myself off them.

Plan out your week this week so you know exactly what is planned for each day. Big Hug x

Very good advice Holy. Something that we should all subscribe too.

I dont know what I expected after Dd3 was dxed, it had taken us 3.5 years to get her issues taken seriously. The week after the dx she was discharged from CAMHS then fron community paeds then from physio. She had already been discharged from salt and ot.

It was as if these people were saying, there you got what you wanted now bugger off and get on with it.

I was really down for a while. She was still the same child with the same issues and now we know it is ASD but there didnt seem to be any support on offer.

After a few weeks I went to see the lovely SENCO at her school who was equally shocked about our situation. She had already got Dd3 in some groups at school but she took over some of her physio too and put me in touch with some people running a course about ASD. SHhe has also tried v hard to get outreach services involved but i havent seen anything of them yet.

I also joined a support group which is good for airing parenting stuff because we all sit there smiling and saying oh yes my ds/dd does that. I find it very helpful. We go out sometime as a group too with and without the dc's.

Sorry this is so long, i just wanted to let you know that you are not alone and that there are people out there who can support you if you can only find them.

You are a great mum, dont lose sight of that. Be kind to yourself sometimes and keep coming on here.

Good luck.

I do think that often we are in the position that we are climbing up a steep mountain, and we feel that there should be SOMETHING at the top... and when we get there... or to a plateau... there's NOTHING... and it's a huge let-down..

We're still waiting for the decision from LA re DS2's school, and honestly, I'm afraid to ask to find out right away, as I dread the fight.. figure I'll be back on that mountain climbing again...

But yes, school holidays also brings out the worst in DS2 (change in schedule for a start). So the ADHD/ASD behaviour seems endless and exhausting.

I think just focus on today and each day until he is back in school and go from there.

I feel just the same spent 18 months fighting to get ds into independent specialist school been there since October) and to keep him there (tribunal soon) Ds is beginning to thrive, pretty sure LA will pull out of Tribunal so should be feeling more positive than ever but instead I feel flat, probably depressed and so tired of it all.I suspect that it's a hangover from the adrenalin I've been living on.No idea what to advise though, will get Tribunal over and then see GP if I haven't picked up I think.

Thank you for your replies...

I could relate to all of them, they all helped.
I think in all honesty the Easter Holidays have been tougher then i expected/ hoped, DS has only been in his new school 6 wks. He struggles with every change and he's had more then his fair share!
Right im off to landscape the garden and rebuild the house...cant do anything by halves! lol

Thanks. xxx

Hi Shelly

You did very well to get him into independant provision. That effort alone will have left you drained.

My DS is much older. The endless round of meetings does tail off after a while. CAMHS appointments become less frequent as time goes on.

There will always be the IEPs, Annual Reviews, DLA renewals etc, but after a while, and with experience, you do become more relaxed about them.

As with all children with ASd, he'll take a while to settle into his new school, but you should start to notice improvenments as he's now in an environment that understands his difficulties and can devlop strategies to manage them.

You also need to make time for yourself - which I know is easier said than done